Hi there, I am a frequent "viewer" rather than poster here and I also follow Colontown groups on FB but am not a FB person either so there's that. I am so jacked up about this thread. I see my care team at Northwestern in Chicago tomorrow and will be strongly advocating for their assistance in helping to determine if I'm a good fit for this particular trial at NIH. Based on my knowledge and Foundation One report I've finally got all the right moving parts to qualify (or so it would seem). I've had a particularly grueling summer. Vascular surgery to move two tumors blocking the IVC and renal artery plus as failed immunotherapy attempt using atezolizumab and cobimetinib. It was pretty horrendous to get approval from insurance and that was before I went on LTD, so also walked away from a 30 year career, sixteen of those at my local community hospital that I loved. Thanks, Cancer!
So, because I remain hopeful and want to try whatever I can to slay this belly of the beast I am a nervous wreck waiting for my appointment tomorrow to see what the team says. My oncologist is an active bench researcher so I feel good about his thoughts on this.
As for my failed immuno experience this summer, it was his idea to try it based on a clinical trial that concluded last year. It is an approved therapy for melanoma patients. I got sicker from this treatment then just about anything I have tried and I've done it all except Lonsurf which is going to remain off the table for now. The team does not think I'll get much if any benefit from it. The nausea, vomiting and diarrhea was excruciating and they don't have a formal database of side effects as so few people for CRC have actually been on the regimen (that's was what I was told). I still have massive internal inflammation and have been on a strong course of steroids to calm the bowels down and last infusion and oral meds were back in early July. I think immunotherapy gets a lot of positives and it certainly makes a great deal of sense but my care team told me that there was a good chance it would be pretty toxic for me and it was. We had hope for this but it wasn't meant to be.
OK, so I hope to report back that there's some forward progress on connecting with NIH.
I just want to add a "2 cents" to the thread about the dumbass things people say to cancer patients from another thread. This is a personal favorite. During one of my many treatment cycles (sorry after 8 years I forget which one) my very own brother who refuses to get a screening colonoscopy said this to me after we saw a nice drop in CEA and a lymph node resolve: "See, good things can happen to good people." Right, so I have cancer because I'm nice? It never ends people, it never ends.
Ciao for now and hope this sun is shining in your neck of the woods!
Dx Nov'10 Stage III rectal CA
Dec'10-11 F5U & 25 rad Txs
Mar'11 res,temp ostomy,pos nodes
Mar'11-Nov '11 FOLFOX 12 Txs
Feb'12 CEA elev;liver tum,Stage IV
Mar'12 Liver res, gallbladder out,ostomy rev
Feb'14 Elev CEA Pos para-aortic lymph nodes
May '14-Aug'14 FOLFIRI + Avastin (6 rnds, red. dose)
Sept-Oct '14 SBRT nodes
Sept'15 CEA elev,new PALN pos
Oct-Nov '15 SBRT nodes
Feb '16 CEA elev,new PALN pos
Apr-May Red dose Stivarga
Oct '16 CEA elev,new PALN pos
'18 mult sm lung mets, PALNs; CEA UP, maint. 5FU